No surprises today at Rifkin's office. IGGs are up to 5000. Treatment is scheduled to start September 17th, the day after we return from Florida. Yes, we are going to Florida. Susan and I agreed in advance of the appointment that we would not press the case for going to Florida, but rather would let Rifkin make his recommendation and we would accept it. While he's not at all happy with the rising IGGs he does believe in our having a life. When asked what risk I would face by delaying treatment 3 weeks, his response was simply: "you'll be at risk for hurricanes." So we are, of course, very happy that we'll have 2 weeks in sunny Florida to celebrate our 25th anniversary, and rest up for the next onslaught of chemo.
Following Rifkin's exam, 2 nurses gave us the rundown on the chemo I'll be receiving: VDR--velcade, dexamethasone (steroids), and revlimid (a thalidomide derivative), along with some type of antibiotic. So, we got the list of horribles (possible side effects): fatigue, neuropathy, blood clots, muscle cramps, diarrhea, constipation, and some lesser ones. Nothing new, but a bit sobering after not having to deal with these issues for the better part of a year, and while the 2 chemo drugs bring a greater chance of efficacy, I have the sense they bring an increase in side effects. The plan is to treat me with 3 or 4 cycles of chemo--3 weeks per cycle and then reassess. The cost of this new treatment??? An astonishing $10,000 per week.
Following that course of treatment Rifkin suggested we'll talk about another transplant. I still can't bring myself to think about going through that again, so I pressed him on whether the new drug combos would, in fact, decrease the chance for another transplant. He was encouraging, but noncommital. The standard of care these past 5 years or so is to have 2 transplants, as that has proven to be most effective in stemming the growth of the disease for any significant period of time (2 to 3 years). But the toll is high and the recovery excruciating. Besides, my autologous transplant (using my own cells) was not successful--according to Rifkin at the time. Now, it seems he wants to reassess that impression in light of my last year of stability--or look at a transplant from one of my brothers, although he said he would prefer not to put me through that, as a transplant from a foreign donor (yes both of my brothers are "foreign" to me!!!), is even more difficult to deal with.
Are we having fun yet?? I am still of a mind that the fast paced research will bring enough drugs on the market that I can be on a maintenance dose for the rest of my life, rather than having transplants every 2 to 3 years. The trick with that approach is to find drugs that the myeloma doesn't figure out how to work around. It is apparently a smart disease--certainly too smart for my own good!
So, I'm working on adjusting my mind to deal with the return to chemo, as well as an unknown future. (but then aren't all of our futures unknown?) I'll get there and going to Florida with my bride will certainly help. I guess it's also time to kick up that meditation practice, even though I have maintained my daily practice, I found that adding an extra hour of meditation helped keep me out of depression during the rough spots. Kind of the opposite of the mob's "going to the mattresses", I guess.
And Julia leaves for South Africa on Wednesday. Boy are we going to miss her. This is such an adventure--3 1/2 months on the other side of the world! Her blog address is southafricanstudies.blogspot.com for those of you who are interested in following her adventures. Tune in as it will likely provide some interesting narrative about the South African culture. What would we do without the internet?
Catherine will have to carry us while Julia is away. We expect that we'll probably see her every day for her morning cup of coffee with her parents before she heads off to work, as well as for at least one dinner a week. Both girls are already stepping up to keep their Dad in good spirits through this next ordeal, with funny greeting cards and "you'll get through this Dad" words of encouragement. Susan is similarly positive and none of them will let me spend any time worrying about how I will handle this next round.
So there you have it. It has been a nice break but I guess it's time to get back to work. I hope you all are ready, as your shoulders proved quite large and strong for us in the past, and we may need them once again. Bill Withers' song "Lean on Me', comes to mind:
Sometimes in our lives we all have pain
We all have sorrow
But if we are wise
We know that there's always tomorrow
Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on
Our family continues to marvel at the hidden blessings cancer has given us. Life has blossomed into an amazing experience, and after all, isn't that what we all want out of our lives? So, on to our next adventure. We're sure glad you're with us on this journey.
With Much Love and Gratitude,
Dan
Monday, August 27, 2007
Monday, August 06, 2007
The Run is Over
Much to our surprise, given how I have generally been feeling, and the good bone marrow biopsy, we had a difficult visit with Rifkin today. The IGGs have spiked to 4200, up from 2900 last month. I pressed him on how the IGG's could be so high, given the bone marrow biopsy. It seems that myeloma is "patchy", meaning that the bone marrow biopsy can tap a lower concentration of myelma and give a distorted view of the degree of myeloma. And I thought the bone marrow biopsy was the definitive test!
I told Susan they should have put me in a blender and shaken me up before the biopsy to make sure the myeloma was fully diluted. She didn't think I was funny. Anyway, the IGGs are concerning enough that we will be starting treatment--the only hitch being our 25th anniversary trip to Florida planned for early September. I have another visit with Rifkin in late August and if things are relatively stable we'll get the green light and I'll start treatment as soon as I return. Otherwise, our trip is cancelled, which would be the 3rd cancellation for me this year. Does it seem that the message I'm being given is that I should just stay home?
The treatment options are also more narrow than I expected. Although there are new drugs being tested, the criteria for the clinical trials generally exclude you if you've had 2 cancers, so my prostate cancer excludes me from participation in at least one trial, and may exclude me from the very promising HSP-90 trial. We are most likely looking at the 4 drug combo of velcade, revlimid, dexamethasone (steroid) and an antibiotic.
While difficult to hear, it is not as if I ever thought my cancer was gone, or that I would escape further chemo. We will deal with this, as we have with much worse over the last 2 years.
We continue to be blessed by the support of family and friends. My brother Tom and his daughter Gina were here over the weekend. Gina is a wonderful young lady and we were very glad to be able to spend some time with her, and for our "girls" to have the chance to meet her, as young adults. My cousin Sheila Carpenter and her daughter, Diana, arrive today for a short visit. It has been years since I've seen Sheila and we are looking forward to her visit.
Julia leaves for a semester overseas--South Africa, at the end of the month. We will miss her greatly but are excited for her and know that she will return a very changed person.
And our lives go on. As I've often said, it's certainly not the life I would script for us, but it is a life. And all of you make it worthwhile.
Love,
Dan
I told Susan they should have put me in a blender and shaken me up before the biopsy to make sure the myeloma was fully diluted. She didn't think I was funny. Anyway, the IGGs are concerning enough that we will be starting treatment--the only hitch being our 25th anniversary trip to Florida planned for early September. I have another visit with Rifkin in late August and if things are relatively stable we'll get the green light and I'll start treatment as soon as I return. Otherwise, our trip is cancelled, which would be the 3rd cancellation for me this year. Does it seem that the message I'm being given is that I should just stay home?
The treatment options are also more narrow than I expected. Although there are new drugs being tested, the criteria for the clinical trials generally exclude you if you've had 2 cancers, so my prostate cancer excludes me from participation in at least one trial, and may exclude me from the very promising HSP-90 trial. We are most likely looking at the 4 drug combo of velcade, revlimid, dexamethasone (steroid) and an antibiotic.
While difficult to hear, it is not as if I ever thought my cancer was gone, or that I would escape further chemo. We will deal with this, as we have with much worse over the last 2 years.
We continue to be blessed by the support of family and friends. My brother Tom and his daughter Gina were here over the weekend. Gina is a wonderful young lady and we were very glad to be able to spend some time with her, and for our "girls" to have the chance to meet her, as young adults. My cousin Sheila Carpenter and her daughter, Diana, arrive today for a short visit. It has been years since I've seen Sheila and we are looking forward to her visit.
Julia leaves for a semester overseas--South Africa, at the end of the month. We will miss her greatly but are excited for her and know that she will return a very changed person.
And our lives go on. As I've often said, it's certainly not the life I would script for us, but it is a life. And all of you make it worthwhile.
Love,
Dan
Tuesday, July 03, 2007
Still In the Plateau
Apparently the deeper in me they go, the better I look. Even though the IGGs are on the rise, the bone marrow biopsy shows my cancer levels at 10% or less. For a few points of comparison, my last bone marrow biopsy in December 2005 showed my cancer levels at 39% --after transplant, and when I was first diagnosed in March 2005 they were are 67%! This month's skeletal survey also did not reveal any new lesions, only evidence of the old ones which Rifkin says it takes 10 years or more for the body to repair. So what does this mean, you ask? NO CHEMO! I must say that Susan and I were completely taken aback by the news, as the buildup over the last 2 months, with the IGGs rising, the tests increasing, the discussions focusing upon particular types of treatment (remember the 4 drug cocktail?), all lead us to believe the inevitable was upon us. Not so. Rifkin does not want to treat me until he is sure my myeloma is progressing, and at this point he believes I am still in the plateau. He is also quite enthusiastic about a new drug, HSP-90, a heat shock protein treatment, that is a nontoxic chemo treatment. He is involved in the phase III trials for this drug, and he says it holds much promise and would like to use it with me provided it moves through the approval process rapidly. So by the time I see him again in early August, I will be 11 months without treatment. Amazing, truly amazing.
The month to month nature of this life does take its toll, however. I went into somewhat of a depression this weekend in anticipation of the beginning of the chemo wars (rare for me). Susan spent a restless night Sunday night and prayed most of the night while lying in bed contemplating our next rounds of chemo. And in an instant the fears and concerns are erased, ableit temporarily. So while we are delighted with the news, we feel we continue to be in a holding pattern as Rifkin is quite clear treatment will resume at some point.
You bloggers may remember our friends Sigun and Joe Coyle, who often posted from Paris during the past few years. They are here visiting and Sigun prepared one of my favorite meals for Monday night, either to soothe or to celebrate. Well, we had a celebration last night, complete with champagne! We toasted our good fortune for having so many friends and family who have carried us through these rough waters, and to whom we give much credit for my continued existence "in the plateau". Here's to you!
Love,
Dan
The month to month nature of this life does take its toll, however. I went into somewhat of a depression this weekend in anticipation of the beginning of the chemo wars (rare for me). Susan spent a restless night Sunday night and prayed most of the night while lying in bed contemplating our next rounds of chemo. And in an instant the fears and concerns are erased, ableit temporarily. So while we are delighted with the news, we feel we continue to be in a holding pattern as Rifkin is quite clear treatment will resume at some point.
You bloggers may remember our friends Sigun and Joe Coyle, who often posted from Paris during the past few years. They are here visiting and Sigun prepared one of my favorite meals for Monday night, either to soothe or to celebrate. Well, we had a celebration last night, complete with champagne! We toasted our good fortune for having so many friends and family who have carried us through these rough waters, and to whom we give much credit for my continued existence "in the plateau". Here's to you!
Love,
Dan
Saturday, June 02, 2007
Ouch!
Yes, ouch, is my response to the news yesterday--IGGs have jumped to 2650, a rise of more than 700 points. The nonchemo period has come to an end. Before I commence treatment I have to undergo extensive testing to "restage" my disease, including the not very comfortable (to say the least) bone marrow biopsy, and the skeletal survey to see if I have any bone involvement, plus much more blood work. Even though we had kind of decided upon a chemo cocktail last visit, new data has brought more options into the picture. Rifkin is making yet another presentation on multiple myeloma to some cancer society in mid June and he said that when he sees me again (on July 2) he will have all the latest data from all the clinical trials around the world at his fingertips. So who knows what they'll put in me come July.
Although the news comes as no surprise, I find I'm struggling to deal with it. Over the years, life has taught me that difficult times can be dealt with and that eventually the difficulties subside and life returns to some form of what it used to be. Not so with this disease. There is no going back, no return to that easier time. No, it seems we must just move forward and accept a life with a very different, much more coarse texture. The struggle these days, as with most days since the diagnosis, is mental, working against old notions and habits and accepting the new pattern.
And for a lighter note: I had a great time back in Dickinson last week. My mother and her husband, Bob, are doing well. My sister Kathy and her husband, John, came down from Minot and spent a few days there as well. I think the average life expectancy for people in Dickinson is markedly higher than the rest of the country, as you can feel the pace of life slow down when you drive into town. They just take things slower there. So we took it pretty easy, leisurely coffee in the morning, walks around town, and going out for steak at the Elks club.
We also had the chance to see my uncle, Woody Gagnon, who is now 93 years old and doing remarkably well. We spent many holidays with the Gagnons over the years and it was nice to spend some time with Woody and his son, Ed, whom I haven't seen in many years. Ed's brother, George, is responsible for bringing me to Colorado way back in the mid-70s, when I taught at the Open Living School in Evergreen, Colorado, where George was the principal. I fell in love with Colorado and determined this was where I wanted to live. George, on the other hand, has fled the state--to teach at Berkely. (just kidding George, no you didn't flee the state.....at least not that I know of!)
Susan, Catherine and Julia had a more glamorous Memorial Day getaway in Palm Springs, with cousine Eileen. They, too, took it easy sunning at the pool or going out to eat at more elegant restaurants than the Elks club. They arrived back fully bronzed, rested, and grateful, once again, for the generosity of cousin Eileen.
So with a slight adjustment of my mental state, which I know will come in a few days, I will once again know that life is good. We continue to give thanks every day for all the friends who support us through this very different life. I'll check in after the July 2 visit with Rifkin. Until then, we send all our gratitude for your being in our lives.
Love,
Dan
Although the news comes as no surprise, I find I'm struggling to deal with it. Over the years, life has taught me that difficult times can be dealt with and that eventually the difficulties subside and life returns to some form of what it used to be. Not so with this disease. There is no going back, no return to that easier time. No, it seems we must just move forward and accept a life with a very different, much more coarse texture. The struggle these days, as with most days since the diagnosis, is mental, working against old notions and habits and accepting the new pattern.
And for a lighter note: I had a great time back in Dickinson last week. My mother and her husband, Bob, are doing well. My sister Kathy and her husband, John, came down from Minot and spent a few days there as well. I think the average life expectancy for people in Dickinson is markedly higher than the rest of the country, as you can feel the pace of life slow down when you drive into town. They just take things slower there. So we took it pretty easy, leisurely coffee in the morning, walks around town, and going out for steak at the Elks club.
We also had the chance to see my uncle, Woody Gagnon, who is now 93 years old and doing remarkably well. We spent many holidays with the Gagnons over the years and it was nice to spend some time with Woody and his son, Ed, whom I haven't seen in many years. Ed's brother, George, is responsible for bringing me to Colorado way back in the mid-70s, when I taught at the Open Living School in Evergreen, Colorado, where George was the principal. I fell in love with Colorado and determined this was where I wanted to live. George, on the other hand, has fled the state--to teach at Berkely. (just kidding George, no you didn't flee the state.....at least not that I know of!)
Susan, Catherine and Julia had a more glamorous Memorial Day getaway in Palm Springs, with cousine Eileen. They, too, took it easy sunning at the pool or going out to eat at more elegant restaurants than the Elks club. They arrived back fully bronzed, rested, and grateful, once again, for the generosity of cousin Eileen.
So with a slight adjustment of my mental state, which I know will come in a few days, I will once again know that life is good. We continue to give thanks every day for all the friends who support us through this very different life. I'll check in after the July 2 visit with Rifkin. Until then, we send all our gratitude for your being in our lives.
Love,
Dan
Monday, May 07, 2007
White Count Rebound
We had a nice visit with Rifkin today. The blood work was only of the basic tests, not the myeloma numbers--the blood work is known as a CBC or Complete Blood Count. Remember, my white count was very low 2 weeks ago? Well, the white count has rebounded and is now in the normal range. Even more encouraging to me was the fact that the hematocrit is back up. Hematocrit measures the number of red cells and the size of the red blood cells. The number is expressed in a percentage. Low hematocrit is associated with a number of disorders, including multiple myeloma. My hematocrit has never been normal since my blood work was first done in March 2005---until now! It has hovered in the low 30% range, but started to rise a few months ago, only to drop last month. Today, for the first time in 2 years, my hematocrit is in the normal range (42% for the scientists among you bloggers). Now, this doesn't mean I don't have myeloma, as we know those numbers have been rising, but it does mean that at least for the time being I continue to hold my own. This was the best CBC I have had since all this nonsense started, so we're feeling pretty good today. The roller coaster ride is being nice to us today.
We also had a chat with Dr. Mattous, who now heads the transplant program at the cancer center. He was also very encouraging, telling us that they are testing a number of new drugs that appear to be very promising. He said Rifkin will talk to us about them when it is time to restart chemo. The drugs don't have names yet, only numbers assigned, so I don't know what they're looking at. All in all it was a nice visit.
We canceled our planned trip to New York a few weeks ago, as I was just too tired and, with the immunosuppression, was very concerned about picking up some bug, or tiring myself out with all the travel. We were so sorry to miss seeing Arlene and Jimmy, as well as Sigun and Joe, and our other friends in East Hampton, Alexandra and Karen, but felt compelled to be safe.
The girls, including Susan, are headed to Palm Springs in a few weeks for the annual girls Memorial Day Weekend. Eileen treated the group to a trip to Scottsdale last year. This year she has reserved a suite in Palm Springs and the girls bagged some cheap fares to San Diego, so off they go for a long weekend (or is it a week) in the sun.
I, on the other hand, will be going home to see my mother during that weekend, now that I'm no longer immunosuppressed. I haven't been back to Dickinson in 7 years, so it's about time. Mom, of course, is ecstatic. Dickinson is full of so many friends who have been praying for me, calling, sending cards, and emailing during these past 2 years. I, too, am excited to be going home.
Every day I count my blessings for my life and for all of you in my life who have carried us through this difficult time. You have shown me that the love of family and friends is truly a very powerful force.
Much love to all,
Dan
We also had a chat with Dr. Mattous, who now heads the transplant program at the cancer center. He was also very encouraging, telling us that they are testing a number of new drugs that appear to be very promising. He said Rifkin will talk to us about them when it is time to restart chemo. The drugs don't have names yet, only numbers assigned, so I don't know what they're looking at. All in all it was a nice visit.
We canceled our planned trip to New York a few weeks ago, as I was just too tired and, with the immunosuppression, was very concerned about picking up some bug, or tiring myself out with all the travel. We were so sorry to miss seeing Arlene and Jimmy, as well as Sigun and Joe, and our other friends in East Hampton, Alexandra and Karen, but felt compelled to be safe.
The girls, including Susan, are headed to Palm Springs in a few weeks for the annual girls Memorial Day Weekend. Eileen treated the group to a trip to Scottsdale last year. This year she has reserved a suite in Palm Springs and the girls bagged some cheap fares to San Diego, so off they go for a long weekend (or is it a week) in the sun.
I, on the other hand, will be going home to see my mother during that weekend, now that I'm no longer immunosuppressed. I haven't been back to Dickinson in 7 years, so it's about time. Mom, of course, is ecstatic. Dickinson is full of so many friends who have been praying for me, calling, sending cards, and emailing during these past 2 years. I, too, am excited to be going home.
Every day I count my blessings for my life and for all of you in my life who have carried us through this difficult time. You have shown me that the love of family and friends is truly a very powerful force.
Much love to all,
Dan
Monday, April 23, 2007
A 2 to 4 Week Reprieve
The long awaited visit was a bit anticlimatic. So I guess that's a good thing. Numbers report: IGGs 1898, up from 1756, or something like that last month. M protein is at 1.2. It should be zero and has been at 1.0 for the past couple of months, up from a low of .6 in November or December. The white count from last week is 2.1, which is low. Neutrophils, which are the most important white cells are at 1100. I think that following my transplant they needed to be at 1500 before I could leave the hospital. So, I'm definitely immuno-compromised. All I feel is tired and then more tired. I'm dosing with Vitamin C, hoping to fight off any bugs that might want to take advantage.
So, the plan? Rifkin will see me in 2 weeks to check the white count. If it's still low, he'll probably start treatment. Otherwise, if it goes up, he'll wait until my IGGS reach 2000, then he'll start treatment. He feels that the rise of 100 points from last month is not critical. Once treatment begins, he wants to do a 4 drug combination (VDRB) of velcade, decadron (steroid), revlimid (new drug approved at same time velcade was approved) and biaxcin (also known as clarithromyicin)--which seems to be an antibiotic used for serious bacterial infections like pneumonia, streptoccus, etc. Rifkin said this seemed to be the consensus of the group he consulted. He gave us the name of the doctor who just finished a trial on this and said the results were very promising. The doses of velcade and the steroid may be lower than what I was on last summer, which my nerves will appreciate. This VDRB combination has been so effective that physicians are considering recommending this instead of stem cell transplants, which is quite encouraging. Prior to these two new drugs, velcade and revlimid, being approved, there was only one treatment that was thought to be capable of driving this nasty disease into temporary remission--which was stem cell transplant.
Many months ago Rifkin told us that, while velcade and revlimid were exciting developments, drug combinations held even more promise. During this 8 months without chemo, a number of clinical trials have reported their results (results are only published when the trials are completed) and they hold much promise in terms of extending longevity, time to disease progression, etc. So, the longer I go without treatment, the more the doctors know.
And, Rifkin released me to travel to New York this week to visit Susan's cousins, Arlene and Jim, and our friends Sigun and Joe. Rifkin did not enthusiastically encourage us to go, rather I would say he reluctantly approved--no doubt due to the low white count, but on the other hand, wanting Susan and me to have a life. So, with that in mind we intend to "have a life" by going to the ocean for a week. Once again our friends and family are taking care of us, as they have for the past 2 years. I guess I'll provide a new post in about 2 weeks just to let you know what the status is.
All my love,
Dan
So, the plan? Rifkin will see me in 2 weeks to check the white count. If it's still low, he'll probably start treatment. Otherwise, if it goes up, he'll wait until my IGGS reach 2000, then he'll start treatment. He feels that the rise of 100 points from last month is not critical. Once treatment begins, he wants to do a 4 drug combination (VDRB) of velcade, decadron (steroid), revlimid (new drug approved at same time velcade was approved) and biaxcin (also known as clarithromyicin)--which seems to be an antibiotic used for serious bacterial infections like pneumonia, streptoccus, etc. Rifkin said this seemed to be the consensus of the group he consulted. He gave us the name of the doctor who just finished a trial on this and said the results were very promising. The doses of velcade and the steroid may be lower than what I was on last summer, which my nerves will appreciate. This VDRB combination has been so effective that physicians are considering recommending this instead of stem cell transplants, which is quite encouraging. Prior to these two new drugs, velcade and revlimid, being approved, there was only one treatment that was thought to be capable of driving this nasty disease into temporary remission--which was stem cell transplant.
Many months ago Rifkin told us that, while velcade and revlimid were exciting developments, drug combinations held even more promise. During this 8 months without chemo, a number of clinical trials have reported their results (results are only published when the trials are completed) and they hold much promise in terms of extending longevity, time to disease progression, etc. So, the longer I go without treatment, the more the doctors know.
And, Rifkin released me to travel to New York this week to visit Susan's cousins, Arlene and Jim, and our friends Sigun and Joe. Rifkin did not enthusiastically encourage us to go, rather I would say he reluctantly approved--no doubt due to the low white count, but on the other hand, wanting Susan and me to have a life. So, with that in mind we intend to "have a life" by going to the ocean for a week. Once again our friends and family are taking care of us, as they have for the past 2 years. I guess I'll provide a new post in about 2 weeks just to let you know what the status is.
All my love,
Dan
Thursday, March 22, 2007
Hold the Treatment, Let's Consult the Nation's Experts
We had the much dreaded meeting with Dr. Rifkin this afternoon. I had blood drawn on Tuesday so we could have the most current "numbers" to discuss. I had with me a color graph of my IGG's since this nonsense began (compliments of my daughter Catherine), research from the many recent clinical trials (thanks to Ted), and 3 pages of questions. The IGG's are up to 1786, a jump of 136. Hematocrit is down a bit, but I'm not anemic. Everything else is OK. We reviewed the many treatment options, discussed my questions, and arrived at the following decision: Rifkin wants to present my case as part of a presentation he is giving in Houston on March 29th. He specifically intends to discuss it with the nation's myeloma experts as part of their prep the night before the seminar. (He liked Catherine's chart, thought it was "helpful" and, who knows, may use it). His goal? To arrive at a treatment option that (1) could be used long term, (2) is not toxic, and (3) controls the myeloma. Who could disagree with that? As a consequence he is not going to start me on any treatment right now. He is unconcerned about going another month without treatment, even though the numbers are drifting up.
Just as I have the greatest family and the most fantastic friends, I have the best doctor. Susan and I love this guy. We will have the nation's experts consulting on my case! So, my friends, I have a respite. We continue to live month to month and that's OK. It brings the focus to the day to day and keeps the mind from running too far ahead of our lives. Amazingly that can be the source of great joy. Any moment you choose to live in is most probably joyous. So we will stay there for now, and if we are strong enough, we will stay there forever.
Love to all,
Dan
Just as I have the greatest family and the most fantastic friends, I have the best doctor. Susan and I love this guy. We will have the nation's experts consulting on my case! So, my friends, I have a respite. We continue to live month to month and that's OK. It brings the focus to the day to day and keeps the mind from running too far ahead of our lives. Amazingly that can be the source of great joy. Any moment you choose to live in is most probably joyous. So we will stay there for now, and if we are strong enough, we will stay there forever.
Love to all,
Dan
Thursday, March 01, 2007
Shaking Hands With Disappointment
"I'd like to shake your hand, Disappointment. Looks like you win again." Excuse my theft of the Neil Young lyric, but there is no other way to describe the feeling today, when advised by Dr. Rifkin that the inevitable is upon us--a return to chemo. While we don't have the numbers from today, the trend is such that he is "worried". I suppose there is a chance that the numbers report on Monday could turn the other way and hold off treatment, but there was not much optimism about that being the case. The trend is upward with the IGGS, as well as the M protein, two critical measurements. Rifkin wasn't ready to talk in much detail about the options. We have an appointment in 3 weeks, to review options, data, and to plan the course ahead. The appointment is on March 22, a mere 2 days before the 2 year anniversary of the diagnosis. I will be doing my homework so I can make a recommendation to him. It will likely be velcade and some other drug, either a steroid or another chemo drug. God, he must hate me as a patient!
I'm having more difficulty handling the news than I would have expected. Despite the prostate surgery, and the recovery from that, this past 6 months has been a welcome return to some routine in our lives. I have been able to keep out thoughts of returning to treatment and generally enjoyed most of my days. Now that a return to treatment is likely, all the memories of being on chemo flood my mind. Stated simply, it's just no fun. Can the family handle more 'roid rage? And of course there is concern that treatments won't work and we'll face more difficult decisions. The mind loves the drama. I guess I'll have to get my mind back into shape to steele it from these flights into the valleys of pessimism.
But to give things a different perspective: A year ago I was bracing for yet another transplant, using the stem cells from one of my brothers. Through that lens, today seems OK. I told Suz today I need my two days to get over this news and get my head screwed on straight. I'll come around soon. In fact, as I write this to my silent bloggers, I start to feel better already. The connection this blog has given me to so many people around the world continues to lift my spirits. The wonders of cyberspace.
Next week Susan and I will be in Scottsdale, AZ. My friend, Joe Epstein, whom I'm mediating with, offered us his home ithere. All this was planned before we had today's news. We must be in sync with something. So that will be a nice respite before life turns more difficult. Joe has been a godsend. He has kept me as busy as I can be this month with mediations, which is a tremendous help with the dental bills, health insurance, etc. Plus it gets me out of the house and gives me something to do. I continue to be amazed at how our friends still take care of us.
We are experiencing first hand the country's health insurance crisis. Because my health insurance is keyed to my employment and there is always the risk of my not being able to work at all, losing my health insurance and having to go on Medicare, we've had to get Susan and Julia on a private policy (so she wouldn't be without insurance if I went on Medicare). Not surprisingly, at her age, she has a few health issues, which the new insurance company has used to increase the standard premium by 75%!!! But we had no choice. We are glad her insurance is no longer linked to my employment, although we pay dearly for it. I don't know what people do who don't have the means to handle these costs. No, I do know what they do--they don't have insurance.
We are doing OK. We will let you know what we learn at the 3/22 appointment. Stick with us. We will continue to enjoy life, despite today's news. We've dealt with worse and we still love our life and all those wonderful people who fill our lives with such joy.
Neil Young ends his lyric about meeting disappointment with this, "But this time might be the last." He goes on to say, "I'm savin' the best 'til last; let's leave this all in the past." Yes, maybe this disappointment might be the last. And if it's not? Well, we will continue with this journey. Love to all,
Dan
I'm having more difficulty handling the news than I would have expected. Despite the prostate surgery, and the recovery from that, this past 6 months has been a welcome return to some routine in our lives. I have been able to keep out thoughts of returning to treatment and generally enjoyed most of my days. Now that a return to treatment is likely, all the memories of being on chemo flood my mind. Stated simply, it's just no fun. Can the family handle more 'roid rage? And of course there is concern that treatments won't work and we'll face more difficult decisions. The mind loves the drama. I guess I'll have to get my mind back into shape to steele it from these flights into the valleys of pessimism.
But to give things a different perspective: A year ago I was bracing for yet another transplant, using the stem cells from one of my brothers. Through that lens, today seems OK. I told Suz today I need my two days to get over this news and get my head screwed on straight. I'll come around soon. In fact, as I write this to my silent bloggers, I start to feel better already. The connection this blog has given me to so many people around the world continues to lift my spirits. The wonders of cyberspace.
Next week Susan and I will be in Scottsdale, AZ. My friend, Joe Epstein, whom I'm mediating with, offered us his home ithere. All this was planned before we had today's news. We must be in sync with something. So that will be a nice respite before life turns more difficult. Joe has been a godsend. He has kept me as busy as I can be this month with mediations, which is a tremendous help with the dental bills, health insurance, etc. Plus it gets me out of the house and gives me something to do. I continue to be amazed at how our friends still take care of us.
We are experiencing first hand the country's health insurance crisis. Because my health insurance is keyed to my employment and there is always the risk of my not being able to work at all, losing my health insurance and having to go on Medicare, we've had to get Susan and Julia on a private policy (so she wouldn't be without insurance if I went on Medicare). Not surprisingly, at her age, she has a few health issues, which the new insurance company has used to increase the standard premium by 75%!!! But we had no choice. We are glad her insurance is no longer linked to my employment, although we pay dearly for it. I don't know what people do who don't have the means to handle these costs. No, I do know what they do--they don't have insurance.
We are doing OK. We will let you know what we learn at the 3/22 appointment. Stick with us. We will continue to enjoy life, despite today's news. We've dealt with worse and we still love our life and all those wonderful people who fill our lives with such joy.
Neil Young ends his lyric about meeting disappointment with this, "But this time might be the last." He goes on to say, "I'm savin' the best 'til last; let's leave this all in the past." Yes, maybe this disappointment might be the last. And if it's not? Well, we will continue with this journey. Love to all,
Dan
Tuesday, February 13, 2007
Triple Crowns and Other Fun
One aspect of chemo that no one ever told me about was the effect on the salivary glands. It seems that chemo can disable them, as it has done with mine. And without a good amount of saliva being generated, well, bacteria finds places to reside. So, after my first visit to the dentist since before the transplant (I couldn't go when I was on chemo) I now have 6 crowns coming. I've survived 3 last week, and am scheduled for 3 more in a couple of weeks. The fun just never ends!
Speaking of which, I also will be demanding a refund for the flu shot I got this year (as soon as I can remember where I got it) as I now have the flu. Of course, with me, any illness gives rise to major concern, so Susan and I spent this morning at the clinic and the hospital for the complete workup. Throw onto the flu a touch of pneumonia and we're having some fun now! But I'm on Tamiflu (Catherine advised that I should try to squirrel some away in case bird flu hits) and an antibiotic and expect I'll be improving in a few days. I think Susan has a touch of the flu also, but she didn't get anywhere near the attention I got, nor the drugs. So she's just suffering it out.
Other than that, we're doing just fine here.
Speaking of which, I also will be demanding a refund for the flu shot I got this year (as soon as I can remember where I got it) as I now have the flu. Of course, with me, any illness gives rise to major concern, so Susan and I spent this morning at the clinic and the hospital for the complete workup. Throw onto the flu a touch of pneumonia and we're having some fun now! But I'm on Tamiflu (Catherine advised that I should try to squirrel some away in case bird flu hits) and an antibiotic and expect I'll be improving in a few days. I think Susan has a touch of the flu also, but she didn't get anywhere near the attention I got, nor the drugs. So she's just suffering it out.
Other than that, we're doing just fine here.
Saturday, January 27, 2007
Normalcy Continues
Oh, those dreaded IGG counts came in this week: IGG's are now at 1596, up from 1433. Still in the normal range, which tops out at about 1680. As I've said before, we certainly don't like the upward movement but it seems to be inevitable--at least according to Dr. Rifkin, who seems compelled at every visit to advise me, "you know it's going to come back". I continue to reject that in my mind, but it's hard to argue with as I watch the numbers going up. On a positive note, there are other indicators that Dr. Rifkin is watching which are improving. One in particular is the Kappa Lambda ratio of the light chains in the blood. Now, if anyone of you out there understands what that entails I would appreciate some enlightenment. I have tried to figure out what this ratio means but I just can't get it. Anyway, that ratio has been off since diagnosis and now is very close to normal. As with other visits, given that the IGGs are still normal, I know I have at least another month without treatment and probably two.
I also had my checkup with my urologist and everything continues to be fine on that front. PSA is 0.
My mediation practice is set to start this next month. I'll be working with a very experienced mediator here in town, Joe Epstein, and he is rapidly filling my calendar. As I only want to do 1 or 2 mediations a week, he has already filled my February calendar. I'm still struggling a bit with letting go of the identity of a trial lawyer, but am confident that once I fully extract myself from my law firm and start my new life as mediator it will be fine.
The family is doing well. Julia is applying to study abroad next year in South Africa, working with HIV/AIDS clinics there. South Africa certainly has its problems, not the least of which are crime, muggings, etc. But she is determined to work in a third world country and ultimately we left the decision to her. Catherine continues to love her job and is learning more and more about investing (but she still refuses to advise me about my retirement portfolio). Susan now has a job--working as my Chief Operating Officer in my mediation practice. In order to get the health insurance coverage I need, my business is required to employ 2 people. So she is in charge of the bookkeeping, billing, banking, scheduling, filing, etc. She seems happy to do it, but maybe that's only because she knows this business will get me out of the house and she is willing to do anything to see that happen!!
The two year anniversary of my MM diagnosis is just around the corner--March 24. It's hard to believe it's been two years and it's harder to remember what life was like before cancer. I remember when my sister was here in the fall of 2005 just after my transplant and she asked me if I ever had moments where I forgot about having cancer. Sadly, I responded no. I can now say I do have those moments, maybe even hours now where I am engaged in some activity and oblivious of the fact of my disease. I guess one could call that progress.
So, in closing, thanks to all of you who continue to hang in there for us, who silently check the blog, who call and write, and who pray. We know you're out there and we are thankful every day for the blessings that are our friends and family.
Love,
Dan
I also had my checkup with my urologist and everything continues to be fine on that front. PSA is 0.
My mediation practice is set to start this next month. I'll be working with a very experienced mediator here in town, Joe Epstein, and he is rapidly filling my calendar. As I only want to do 1 or 2 mediations a week, he has already filled my February calendar. I'm still struggling a bit with letting go of the identity of a trial lawyer, but am confident that once I fully extract myself from my law firm and start my new life as mediator it will be fine.
The family is doing well. Julia is applying to study abroad next year in South Africa, working with HIV/AIDS clinics there. South Africa certainly has its problems, not the least of which are crime, muggings, etc. But she is determined to work in a third world country and ultimately we left the decision to her. Catherine continues to love her job and is learning more and more about investing (but she still refuses to advise me about my retirement portfolio). Susan now has a job--working as my Chief Operating Officer in my mediation practice. In order to get the health insurance coverage I need, my business is required to employ 2 people. So she is in charge of the bookkeeping, billing, banking, scheduling, filing, etc. She seems happy to do it, but maybe that's only because she knows this business will get me out of the house and she is willing to do anything to see that happen!!
The two year anniversary of my MM diagnosis is just around the corner--March 24. It's hard to believe it's been two years and it's harder to remember what life was like before cancer. I remember when my sister was here in the fall of 2005 just after my transplant and she asked me if I ever had moments where I forgot about having cancer. Sadly, I responded no. I can now say I do have those moments, maybe even hours now where I am engaged in some activity and oblivious of the fact of my disease. I guess one could call that progress.
So, in closing, thanks to all of you who continue to hang in there for us, who silently check the blog, who call and write, and who pray. We know you're out there and we are thankful every day for the blessings that are our friends and family.
Love,
Dan
Thursday, January 04, 2007
Those Troublesome Numbers--Rising But Still "Normal"
I managed to get through our snow-packed streets last week and saw Dr. Rifkin for my monthly checkup. Everything fine at the checkup, white count, hematocrit and platelets are all good. Returned yesterday to get 4 immunization shots due to the fact that my transplant wiped out most of my immunizations, like diphtheria, tetanus, Hepatitus. I also picked up my myeloma numbers: IGGs are at 1433, up from 1207 last month. Still in the "normal" range, but I personally don't like the drifting upward. That being said, the doctor has not said this is a trend or that treatment will soon be resumed. We'll just wait to see what next month's numbers show.
So we are once again challenged in our mental discipline. We really can't contemplate returning to the chemo, whether it's the 'roid rage, the fatigue, the shooting pains, the insatiable appetite or some other unpleasant aspect of treatment. This respite has felt so good and given us a taste of the normal. Of course, we want it to continue. So we steel our minds to stay in present, to enjoy each day, and not to stray forward or to indulge in the anxieties and worries of what might be coming. Today we are happy. Isn't that all that matters?
We had a fabulous holiday. We hooked up with Julia on 12/22 on our way to the Broadmoor for our second annual respite in honor of Susan's birthday. We indulged ourselves with food, relaxation and a trip to the spa. Christmas was fairly low key but very relaxing as was the whole holiday season. Julia is home until Jan. 20th. Catherine continues to love her job and I will soon be moving into a different line of work--mediation, as it does not appear I will be able to do the work of a trial lawyer. Those plans are in the works and should be up and running in about a month or so.
We failed to get our Christmas, New Year's, or Holiday letter out this year, for the second year in a row. But I feel that we have stayed in touch with all our friends and you are fully up to speed on this past year's events. We are happy to be bringing in a new year and to see this past year in our rear view mirror. We continue to be thankful for the support of family and friends and are truly enjoying each day. We wish you all a happy, healthy and prosperous new year.
Love,
Dan
So we are once again challenged in our mental discipline. We really can't contemplate returning to the chemo, whether it's the 'roid rage, the fatigue, the shooting pains, the insatiable appetite or some other unpleasant aspect of treatment. This respite has felt so good and given us a taste of the normal. Of course, we want it to continue. So we steel our minds to stay in present, to enjoy each day, and not to stray forward or to indulge in the anxieties and worries of what might be coming. Today we are happy. Isn't that all that matters?
We had a fabulous holiday. We hooked up with Julia on 12/22 on our way to the Broadmoor for our second annual respite in honor of Susan's birthday. We indulged ourselves with food, relaxation and a trip to the spa. Christmas was fairly low key but very relaxing as was the whole holiday season. Julia is home until Jan. 20th. Catherine continues to love her job and I will soon be moving into a different line of work--mediation, as it does not appear I will be able to do the work of a trial lawyer. Those plans are in the works and should be up and running in about a month or so.
We failed to get our Christmas, New Year's, or Holiday letter out this year, for the second year in a row. But I feel that we have stayed in touch with all our friends and you are fully up to speed on this past year's events. We are happy to be bringing in a new year and to see this past year in our rear view mirror. We continue to be thankful for the support of family and friends and are truly enjoying each day. We wish you all a happy, healthy and prosperous new year.
Love,
Dan
Thursday, December 21, 2006
Digging Out
Here you go bloggers, the most recent pictures of our snowstorm. Catherine, Susan and I just finished digging out Catherine's car (Toyota 4Runner). I supervised and they shoveled. I then drove the car around the block. Julia remains stranded in Colorado Springs as the main highway between Denver and there remains closed. We are hoping to see her for Christmas.
Wednesday, December 20, 2006
Thanksgiving Football
Here are some photos of our Thanksgiving Day football game. In addition to yours truly, other participants included Catherine, Julia, cousins Arlene and Jim Bell, and Julia's friend "Gold Mine" Bob--who works in a gold mine. Fancy that! Susan stayed home to cook! Catherine was voted most improved player for learning how to throw a perfect spiral. Julia was most surprising player--she actually knew how to throw a football. With this current blizzard, and since I have learned how to post pictures, we'll give you all a look at our snow conditions in a few days.
Wednesday, November 29, 2006
Oh, what a difference a year makes
Ah, here it is, the "numbers" report. IGG's are at 1207, a very slight 19 point rise from the previous 1188. Although a few other markers still show the presence of cancer in the blood, there is no treatment planned based on these latest numbers, primarily because the IGGs are still well within the normal range of 680 to 1680. White count is good, as are platelets. Hematocrit is low for most people, but good for me. I continue to feel better, although fatigue is still an issue, but I need fewer daily naps than before. Still some other lingering issues, but they are small compared to where we have been.
I have resumed the herbal regime that I started and then stopped in January when I went on the velcade (that does seem a long time ago, doesn't it?). I've only been doing it for about 2 weeks, so too early to know whether its effective (maybe we'll never know--if the numbers stay down, we can give credit to so many people, therapies, prayers, etc)
So life has taken on a new feel. It feels much less like the life and death struggle it was for so many months last year and into this year. Now we have 3 to 4 weeks of relative peace and then anxiety creeps in as the next appointment with Rifkin approaches. The good numbers report always brings me relief, although Susan would like for the numbers to stop drifting upward entirely. Of course, so would I, but I am a bit more accepting of the ups and downs of this experience. It will be what it will be. As time goes by I gain more and more confidence that new drug therapies and combinations of drugs will be developed which will keep me going and going and going.
This year's Thanksgiving was quite a contrast to last year's. Our friends the Richardsons invited us to their home last year and saved us from a very difficult holiday at home, as I was too sick to have company and even had to nap while at the Richardsons. This year Susan's cousin Arlene, and her husband Jim, came to Denver for the week, and we also had a few other guests, totalling 13 at our table. I was even able to prepare and stuff the bird. Susan, of course, prepared the 10 other dishes!! We even went out and "threw the old pigskin around" with Arlene and Jim. My passes were the worst, but it was great to just be out in the park in the nice Denver weather. Jim taught Catherine how to throw a perfect spiral , which was one of the highlights of the day in the park, the other being the game of tackle that Julia and Catherine engaged in.
I told Susan the other day that I felt like I was waking up from a bad acid trip. Her response? Yeh, except that you woke up shorter and fatter. Oh, what a difference a year makes! I don't get any respect.
My next appointment is just before Christmas so we won't have any numbers until after the 25th. I'll check in with you all then. Until then, Happy Holidays, Merry Christmas, Happy Hanukkah, Happy? Kwanza, and every other holiday wish you might like for the upcoming season.
Love,
Dan
I have resumed the herbal regime that I started and then stopped in January when I went on the velcade (that does seem a long time ago, doesn't it?). I've only been doing it for about 2 weeks, so too early to know whether its effective (maybe we'll never know--if the numbers stay down, we can give credit to so many people, therapies, prayers, etc)
So life has taken on a new feel. It feels much less like the life and death struggle it was for so many months last year and into this year. Now we have 3 to 4 weeks of relative peace and then anxiety creeps in as the next appointment with Rifkin approaches. The good numbers report always brings me relief, although Susan would like for the numbers to stop drifting upward entirely. Of course, so would I, but I am a bit more accepting of the ups and downs of this experience. It will be what it will be. As time goes by I gain more and more confidence that new drug therapies and combinations of drugs will be developed which will keep me going and going and going.
This year's Thanksgiving was quite a contrast to last year's. Our friends the Richardsons invited us to their home last year and saved us from a very difficult holiday at home, as I was too sick to have company and even had to nap while at the Richardsons. This year Susan's cousin Arlene, and her husband Jim, came to Denver for the week, and we also had a few other guests, totalling 13 at our table. I was even able to prepare and stuff the bird. Susan, of course, prepared the 10 other dishes!! We even went out and "threw the old pigskin around" with Arlene and Jim. My passes were the worst, but it was great to just be out in the park in the nice Denver weather. Jim taught Catherine how to throw a perfect spiral , which was one of the highlights of the day in the park, the other being the game of tackle that Julia and Catherine engaged in.
I told Susan the other day that I felt like I was waking up from a bad acid trip. Her response? Yeh, except that you woke up shorter and fatter. Oh, what a difference a year makes! I don't get any respect.
My next appointment is just before Christmas so we won't have any numbers until after the 25th. I'll check in with you all then. Until then, Happy Holidays, Merry Christmas, Happy Hanukkah, Happy? Kwanza, and every other holiday wish you might like for the upcoming season.
Love,
Dan
Sunday, October 29, 2006
Status---Stable
A brief update for you regular bloggers. The proverbial numbers were drawn this week. IGG's are up ever so slightly, from 1144 to 1188. Nothing to worry about. Dr. Rifkin explained that we may see some jumping around of the numbers and only when an upward trend is identified will we start talking about resuming treatment. He has no idea how long this plateau will continue. My brother Tom tells me that a "trend" requires three points (don't ask me where this piece of information comes from, but I will trust the Ph.D.) Anyway, Rifkin continues to be very pleased with my status, congratulated me repeatedly on getting here and will see me again in 3 weeks.
I have started swimming again (trying to lose that 50 pounds the steroids packed on my belly). I cannot express how good it feels to be coming out of the fog. I'm off all drugs, other than one antibiotic. Susan, Catherine and Julia are also enjoying having me back, although they continue to fail to appreciate my sense of humor, which you will all be glad to learn, has returned in tact. So we are enjoying this break from the roid rage, sleeplessness, and fear. We know it's probably not over but the struggle has been redefined, and for that we are grateful.
I'll update you after the next visit.
Love, Dan
I have started swimming again (trying to lose that 50 pounds the steroids packed on my belly). I cannot express how good it feels to be coming out of the fog. I'm off all drugs, other than one antibiotic. Susan, Catherine and Julia are also enjoying having me back, although they continue to fail to appreciate my sense of humor, which you will all be glad to learn, has returned in tact. So we are enjoying this break from the roid rage, sleeplessness, and fear. We know it's probably not over but the struggle has been redefined, and for that we are grateful.
I'll update you after the next visit.
Love, Dan
Thursday, October 12, 2006
A Truce Perhaps? and Healing Images Revisited
Please forgive the long post, but at times, they are warranted. Saw Dr. Rifkin today and he was elated and ecstatic. This is the first he discussed the new IGGs (1144) after 4 weeks of no chemo. Excellent. Other blood measurements which I don't understand also are good, and continuing in the right trend, although they do confirm the continued presence of Mulitple Myeloma. But Rifkin said if I were a new patient, under the new treatment protocals, I would not qualify for treatment at this time: no current bone involvement, normal IGGS, and pretty normal white and red cell count. So, he is not going to treat me either, unless and until the IGGs, or other disease markers start showing the degree of the disease is increasing. He called my current state a plateau. Of course, I had to ask whether the numbers were likely to go up. His answer, yes. But as soon as I heard it I rejected it. I have never followed the expected course here and I won't start now. May the plateau extend beyond the horizon of my life.
So, I go in every 3 weeks for a blood draw and numbers check. As long as we stay on this plateau, no velcade, no steroids. I will receive zometa (the bone hardening drug) every other month (down from once a month).
Rifkin made a comment that I greatly appreciated for implicit in it was the acknowledge of the roller coaster through fire that he has sent me through over the past 9 months. He said, "I really beat you up to get you ready for this prostate surgery, there was no other way to get those numbers down. Now you need a break." This is in reference, I believe to the 11 or 12 cycles of velcade (the last 7 or 8 with the steroid booster) I have only heard of one other patient at the clinic who got to 8 cycles. So, yes, it felt like a beating, and Susan, Catherine and Julia took a piece of it also dealing with the roid rage. Time for some healing. As I got in my car, tears flowed from my eyes. Tears of relief, joy, or however you describe how someone might react to the news that he will get a respite from the most rigorous ordeal he has faced in his lifetime.
I think of the current state of stasis in my blood as a kind of truce. My myeloma and I have come to some terms. I will live for now, and it will live in me for now. I have great respect for this disease. It has the potential to bring me to my knees in an instant. And at the same time, this disease knows I will stand up and walk, even after it throws me to the ground over and over. Whether you call it a stalemate or a truce or something else, we are coexisting for the moment.
In reflecting on the healing that has obviously occurred over the past many months, Susan reminded me of a recent article in the New York Times, Science Section, about the healing energy of friends and families. duh! yeh! where have these scientists been.
So I have first duplicated a blog posting I did in March called healing images, because it perfectly describes these phenomenom of receiving healing energy from family and friends. Then the New York Times article (parts of it) follow.
I feel I am learning something very profound here, and everyone of you is a part of it. Thank you for your lessons. My life depends on it. Keep the prayers, meditations, good thoughts, cards, letters, emails, blog notes, silent "good thoughts" and whatever else you are putting in the universe for me and my family's health and well being. We are receiving it loud and clear.
First, the previous blog posting from last March:
I was so touched by recent blog comments I began contemplating this community of support that has rallied to my aid. The thought arises from this contemplation: our bodies heal themselves when cut, we involuntarily stop bleeding and over time the cells heal the wound. This community of family and friends is a macrocosm of a single body; each of us comprising individual cells in that larger body. The image forms: my body is an individual injured cell, surrounded by healthy cells (you, my friends and family). The healthy cells rally to heal their injured cellular colleague. They press against my cell membrane, sending healing energy into my cell. My cell begins to heal, to reform into a healthy cell, just as the cells in my body are healing. The image is very strong and stays with me. I meditate last night saying a healing prayer known as the Medicine Buddha; A powerful sanskrit chant that takes me into a trance. The image of the community of healthy cells surrounding me stays with me throughout the meditation.
And now portions of the New York Times article:
A dear friend has been battling cancer for a decade or more. Through a grinding mix of chemotherapy, radiation and all the other necessary indignities of oncology, he has lived on, despite dire prognoses to the contrary.
My friend was the sort of college professor students remember fondly: not just inspiring in class but taking a genuine interest in them — in their studies, their progress through life, their fears and hopes. A wide circle of former students count themselves among his lifelong friends; he and his wife have always welcomed a steady stream of visitors to their home.
Though no one could ever prove it, I suspect that one of many ingredients in his longevity has been this flow of people who love him.
Research on the link between relationships and physical health has established that people with rich personal networks — who are married, have close family and friends, are active in social and religious groups — recover more quickly from disease and live longer. But now the emerging field of social neuroscience, the study of how people’s brains entrain as they interact, adds a missing piece to that data.
The most significant finding was the discovery of “mirror neurons,” a widely dispersed class of brain cells that operate like neural WiFi. Mirror neurons track the emotional flow, movement and even intentions of the person we are with, and replicate this sensed state in our own brain by stirring in our brain the same areas active in the other person.
Mirror neurons offer a neural mechanism that explains emotional contagion, the tendency of one person to catch the feelings of another, particularly if strongly expressed. This brain-to-brain link may also account for feelings of rapport, which research finds depend in part on extremely rapid synchronization of people’s posture, vocal pacing and movements as they interact. In short, these brain cells seem to allow the interpersonal orchestration of shifts in physiology.
Such coordination of emotions, cardiovascular reactions or brain states between two people has been studied in mothers with their infants, marital partners arguing and even among people in meetings. Reviewing decades of such data, Lisa M. Diamond and Lisa G. Aspinwall, psychologists at the University of Utah, offer the infelicitous term “a mutually regulating psychobiological unit” to describe the merging of two discrete physiologies into a connected circuit. To the degree that this occurs, Dr. Diamond and Dr. Aspinwall argue, emotional closeness allows the biology of one person to influence that of the other.
John T. Cacioppo, director of the Center for Cognitive and Social Neuroscience at the University of Chicago, makes a parallel proposal: the emotional status of our main relationships has a significant impact on our overall pattern of cardiovascular and neuroendocrine activity. This radically expands the scope of biology and neuroscience from focusing on a single body or brain to looking at the interplay between two at a time. In short, my hostility bumps up your blood pressure, your nurturing love lowers mine. Potentially, we are each other’s biological enemies or allies.
What can I say my friends, but another thank you for all you have done for me and my family. This is a journey like no other and I am so grateful you are there with us.
With much love and gratitude,
Dan
So, I go in every 3 weeks for a blood draw and numbers check. As long as we stay on this plateau, no velcade, no steroids. I will receive zometa (the bone hardening drug) every other month (down from once a month).
Rifkin made a comment that I greatly appreciated for implicit in it was the acknowledge of the roller coaster through fire that he has sent me through over the past 9 months. He said, "I really beat you up to get you ready for this prostate surgery, there was no other way to get those numbers down. Now you need a break." This is in reference, I believe to the 11 or 12 cycles of velcade (the last 7 or 8 with the steroid booster) I have only heard of one other patient at the clinic who got to 8 cycles. So, yes, it felt like a beating, and Susan, Catherine and Julia took a piece of it also dealing with the roid rage. Time for some healing. As I got in my car, tears flowed from my eyes. Tears of relief, joy, or however you describe how someone might react to the news that he will get a respite from the most rigorous ordeal he has faced in his lifetime.
I think of the current state of stasis in my blood as a kind of truce. My myeloma and I have come to some terms. I will live for now, and it will live in me for now. I have great respect for this disease. It has the potential to bring me to my knees in an instant. And at the same time, this disease knows I will stand up and walk, even after it throws me to the ground over and over. Whether you call it a stalemate or a truce or something else, we are coexisting for the moment.
In reflecting on the healing that has obviously occurred over the past many months, Susan reminded me of a recent article in the New York Times, Science Section, about the healing energy of friends and families. duh! yeh! where have these scientists been.
So I have first duplicated a blog posting I did in March called healing images, because it perfectly describes these phenomenom of receiving healing energy from family and friends. Then the New York Times article (parts of it) follow.
I feel I am learning something very profound here, and everyone of you is a part of it. Thank you for your lessons. My life depends on it. Keep the prayers, meditations, good thoughts, cards, letters, emails, blog notes, silent "good thoughts" and whatever else you are putting in the universe for me and my family's health and well being. We are receiving it loud and clear.
First, the previous blog posting from last March:
I was so touched by recent blog comments I began contemplating this community of support that has rallied to my aid. The thought arises from this contemplation: our bodies heal themselves when cut, we involuntarily stop bleeding and over time the cells heal the wound. This community of family and friends is a macrocosm of a single body; each of us comprising individual cells in that larger body. The image forms: my body is an individual injured cell, surrounded by healthy cells (you, my friends and family). The healthy cells rally to heal their injured cellular colleague. They press against my cell membrane, sending healing energy into my cell. My cell begins to heal, to reform into a healthy cell, just as the cells in my body are healing. The image is very strong and stays with me. I meditate last night saying a healing prayer known as the Medicine Buddha; A powerful sanskrit chant that takes me into a trance. The image of the community of healthy cells surrounding me stays with me throughout the meditation.
And now portions of the New York Times article:
A dear friend has been battling cancer for a decade or more. Through a grinding mix of chemotherapy, radiation and all the other necessary indignities of oncology, he has lived on, despite dire prognoses to the contrary.
My friend was the sort of college professor students remember fondly: not just inspiring in class but taking a genuine interest in them — in their studies, their progress through life, their fears and hopes. A wide circle of former students count themselves among his lifelong friends; he and his wife have always welcomed a steady stream of visitors to their home.
Though no one could ever prove it, I suspect that one of many ingredients in his longevity has been this flow of people who love him.
Research on the link between relationships and physical health has established that people with rich personal networks — who are married, have close family and friends, are active in social and religious groups — recover more quickly from disease and live longer. But now the emerging field of social neuroscience, the study of how people’s brains entrain as they interact, adds a missing piece to that data.
The most significant finding was the discovery of “mirror neurons,” a widely dispersed class of brain cells that operate like neural WiFi. Mirror neurons track the emotional flow, movement and even intentions of the person we are with, and replicate this sensed state in our own brain by stirring in our brain the same areas active in the other person.
Mirror neurons offer a neural mechanism that explains emotional contagion, the tendency of one person to catch the feelings of another, particularly if strongly expressed. This brain-to-brain link may also account for feelings of rapport, which research finds depend in part on extremely rapid synchronization of people’s posture, vocal pacing and movements as they interact. In short, these brain cells seem to allow the interpersonal orchestration of shifts in physiology.
Such coordination of emotions, cardiovascular reactions or brain states between two people has been studied in mothers with their infants, marital partners arguing and even among people in meetings. Reviewing decades of such data, Lisa M. Diamond and Lisa G. Aspinwall, psychologists at the University of Utah, offer the infelicitous term “a mutually regulating psychobiological unit” to describe the merging of two discrete physiologies into a connected circuit. To the degree that this occurs, Dr. Diamond and Dr. Aspinwall argue, emotional closeness allows the biology of one person to influence that of the other.
John T. Cacioppo, director of the Center for Cognitive and Social Neuroscience at the University of Chicago, makes a parallel proposal: the emotional status of our main relationships has a significant impact on our overall pattern of cardiovascular and neuroendocrine activity. This radically expands the scope of biology and neuroscience from focusing on a single body or brain to looking at the interplay between two at a time. In short, my hostility bumps up your blood pressure, your nurturing love lowers mine. Potentially, we are each other’s biological enemies or allies.
What can I say my friends, but another thank you for all you have done for me and my family. This is a journey like no other and I am so grateful you are there with us.
With much love and gratitude,
Dan
Saturday, October 07, 2006
Wednesday, October 04, 2006
IT MAY BE HARD TO BELIEVE BUT.......
Yes, it may be hard to believe, given that it took 1 year to get a response to any chemo regime, but, my numbers continue to go down, even though I haven't had chemo in 4 weeks and underwent a prostate surgery during that same 4 week period. I called in for my myeloma numbers today, from the blood draw on Monday, and my IGG's are now at 1144, down from 1231 in late August!!! Yes!!! I'll interrogate Dr. Rifkin next week when he sees me, but right now I am enjoying the progress even though I can't explain it.
Susan and I shared a bottle of wine tonight and enjoyed the good news, which was such a rarity last year. We toasted our good fortune for having so many good friends and family who cared for us during last year's struggles. May our blessings continue.
Love,
Dan
Post Script: I just heard this on a television program of all things, but liked it. Philosopher Kahlil Gibran wrote: "Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
Susan and I shared a bottle of wine tonight and enjoyed the good news, which was such a rarity last year. We toasted our good fortune for having so many good friends and family who cared for us during last year's struggles. May our blessings continue.
Love,
Dan
Post Script: I just heard this on a television program of all things, but liked it. Philosopher Kahlil Gibran wrote: "Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
Saturday, September 30, 2006
WOW!!!!
We have raised $12,750 to date thanks to all of you and many others who may not be bloggers. The Light the Night walk was a great event. We had a beautiful fall evening for the walk and about 20 walkers showed up to walk on my team. The total turnout for the walk was probably in excess of 2000 people, each walking the 2 miles with a lighted balloon. (the furthest I've walked in 2 years!) Thank you to everyone who donated and who walked. It lifted my spirits, and other survivors as well.
Inspired by Thursday night's walk, and wanting to enjoy our beautiful fall weather, I took a 2 1/2 mile walk this morning. I'm feeling quite well, despite the surgery of 2 1/2 weeks ago. My good feelings are no doubt attributable to the absence of any chemo for the past month. The absence of those drugs, and my increased energy, always awaken me to how much those drugs fatigue me. I'm not looking forward to a return to that regime and am hoping that this coming Monday's visit with Dr. Rifkin will bring news of another week off--in the interest of allowing me further time to heal.
I have heard the clamor for Julia's picture, but I can't figure out how to download it onto this site. I will forward it to Ted and ask him to send to his son, Glen, who does all our photo postings.
I will probably get some myeloma numbers later next week, and if so, I'll let you know how my numbers are after this month off from the chemo. Keep your fingers crossed!
Much love to all,
Dan
Post Script: Monday morning: Had my blood drawn for myeloma testing but no visit with the doctor and no chemo. I was advised that Rifkin will see me the end of next week, and make decisions then about when to reinstitute the chemo regime--he wants to give me ample time to heal from surgery. While Susan and I are a bit nervous about being off of chemo for almost 5 weeks, I welcomed the news, as I was really not looking forward to a return of the chemo rollercoaster.
Inspired by Thursday night's walk, and wanting to enjoy our beautiful fall weather, I took a 2 1/2 mile walk this morning. I'm feeling quite well, despite the surgery of 2 1/2 weeks ago. My good feelings are no doubt attributable to the absence of any chemo for the past month. The absence of those drugs, and my increased energy, always awaken me to how much those drugs fatigue me. I'm not looking forward to a return to that regime and am hoping that this coming Monday's visit with Dr. Rifkin will bring news of another week off--in the interest of allowing me further time to heal.
I have heard the clamor for Julia's picture, but I can't figure out how to download it onto this site. I will forward it to Ted and ask him to send to his son, Glen, who does all our photo postings.
I will probably get some myeloma numbers later next week, and if so, I'll let you know how my numbers are after this month off from the chemo. Keep your fingers crossed!
Much love to all,
Dan
Post Script: Monday morning: Had my blood drawn for myeloma testing but no visit with the doctor and no chemo. I was advised that Rifkin will see me the end of next week, and make decisions then about when to reinstitute the chemo regime--he wants to give me ample time to heal from surgery. While Susan and I are a bit nervous about being off of chemo for almost 5 weeks, I welcomed the news, as I was really not looking forward to a return of the chemo rollercoaster.
Friday, September 15, 2006
Home From Yet Another Surgery
The prostatectomy took place on Tuesday, although late in the evening due to an unexpectedly long surgery in the operating room ahead of me. Susan and Catherine were waiting for me in my room when I was wheeled in around 10 p.m. The surgery went better than expected, and although we do not yet have the final pathology report back, my surgeon seems optimistic that we got all the cancer (couched in the appropriate disclaimers we lawyers are trained to recognize). I was discharged yesterday morning and Susan and I promptly went for a short walk around the neighborhood. An activity very reminiscent of last summer's multiple hospitalizations and recoveries. One of our neighbors even asked if I had had a relapse, having noticed my slow deliberate pace. Fortunately that was not the case.
I feel surprisingly good after undergoing this 3 1/2 hour surgery. I walked close to a mile this morning and will take a shorter walk this evening. The walks tire me out but I have learned they are the best recovery mechanism available.
The Light the Night Walk is gearing up well. The response has been tremendous. Thank you to everyone who has supported me in this endeavor. I've already rasied over $6,000!!! I am so committed to this because the new drugs are what has saved my life and I know that others will be facing what I faced when I was first diagnosed. Whatever you can do is greatly appreciated.
Oh, and Julia has, in fact, now shaved her head. We have seen pictures....she is still cute. And we get to see her this weekend. She's always been one to push the boundaries so we're not surprised. She makes me smile. My brother Tom thinks it is a great display of self confidence. Yeh, that's one way to look at it. Or another is ......never mind.
I don't know when we'll start the velcade/steroids routine again, but am actually enjoying the clearheadedness I feel after almost 2 weeks without chemo. I'll probably get next week off also, then back to the weekly chemo infusion. Oh well, that's my life. Thanks for all the support through this last surgery. It feels good to have it behind me.
My surgeon just called with the path results: clear at the margins, which means it does not appear the cancer spread beyond the gland that was removed; or the hormone shots I've been getting for the past year caused it to retreat. He'll watch me for a year or so, with PSA (prostate specific antigen) tests of the blood just to make sure.
Love,
Dan
I feel surprisingly good after undergoing this 3 1/2 hour surgery. I walked close to a mile this morning and will take a shorter walk this evening. The walks tire me out but I have learned they are the best recovery mechanism available.
The Light the Night Walk is gearing up well. The response has been tremendous. Thank you to everyone who has supported me in this endeavor. I've already rasied over $6,000!!! I am so committed to this because the new drugs are what has saved my life and I know that others will be facing what I faced when I was first diagnosed. Whatever you can do is greatly appreciated.
Oh, and Julia has, in fact, now shaved her head. We have seen pictures....she is still cute. And we get to see her this weekend. She's always been one to push the boundaries so we're not surprised. She makes me smile. My brother Tom thinks it is a great display of self confidence. Yeh, that's one way to look at it. Or another is ......never mind.
I don't know when we'll start the velcade/steroids routine again, but am actually enjoying the clearheadedness I feel after almost 2 weeks without chemo. I'll probably get next week off also, then back to the weekly chemo infusion. Oh well, that's my life. Thanks for all the support through this last surgery. It feels good to have it behind me.
My surgeon just called with the path results: clear at the margins, which means it does not appear the cancer spread beyond the gland that was removed; or the hormone shots I've been getting for the past year caused it to retreat. He'll watch me for a year or so, with PSA (prostate specific antigen) tests of the blood just to make sure.
Love,
Dan
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